Muscular Dystrophy Canada is playing a key role in an exciting new patient research initiative called The Christopher Project. We’re working in collaboration with the Marigold Foundation and clinical centers of excellence across North America to survey patients and families about their experiences in living with neuromuscular disease, specifically myotonic dystrophy types DM1 and DM2. The information gathered will be used to increase our shared understanding and address the challenges of living well with this complex disease.
Survey packages were mailed out to patients on our client list in early June – if you received a package, please take some time to fill it out and return it to us. It’s an important opportunity you to share your ‘expert’ knowledge and help us all become better partners in care.
If you or someone you love is affected by myotonic dystrophy, and you would like to participate in this important initiative, please submit your mailing address.
For more information or to fill out the survey online, please visit the Christopher Project website.
Questions? Please contact Marla Spiegel at 1-866-687-2538 ext 1103.
Researchers at the University of Toronto are conducting a study entitled ‘Transition Experiences for Ventilator Assisted Individuals and Family Caregivers Requiring Long-Term Mechanical Ventilation’. The goal of this study is to reveal the experiences of ventilator assisted individuals and their families as they manage transitions across the healthcare system. The information collected will be used to guide future planned assessment of the utility and comprehensiveness of existing information and educational resources for ventilated assisted individuals.
The researchers are looking to interview ventilator-assisted individuals or their primary caregivers from across Canada who have experienced transition within the last two years.
The telephone interview will take place at a time convenient to you, and will last approximately 30 to 60 minutes. During the interview, you will be asked to share your experience managing transitions across the healthcare system, including any:
Participation in the study is voluntary. You will receive $30 honorarium as a thank you for your time.
If you are interested in participating in this study, please contact the study team at 416-864-6060 ext. 77332 or Toll Free 1-877-482-4596 or by email.
If you would like more information, please visit our website or contact Cheryl Pedersen, Project Coordinator at the CRICH Survey Research Unit, St. Michael’s Hospital 416- 864-6060 ext. 77374.